Wednesday, 29 August 2012

R-E-S-P-E-C-T

Having dementia should never change the way someone is
viewed or respected, yet sadly it often does. Many people are unable to see beyond
the disease to the person within, and as a result, it is frequently considered
acceptable to treat someone with dementia in a way that you never would another
adult of the same age who is not living with dementia.

During the years my father spent in care homes I saw
practices and heard remarks that I found highly disrespectful and degrading.
Very rarely were they ever directed at my father in our presence, but when we
were not there you can imagine how conversations may have developed
around him, and the impact that this had in his mind and his sense of who he
was.

Issues around how we respect people with dementia are deeply
rooted within personalisation practices encompassing an appreciation of the person’s
life, choices, style and beliefs when they could express them freely. A simple
example of this comes in how people living with dementia are sometimes dressed.
When they appear in clothes that you know they would never be wearing if they
were not in a care home with dementia, and even more so when those clothes are
dirty or wet, it is disrespectful to the person, and a failing on the most
basic level to appreciate the life that they had before dementia and the
choices that they would make if they were able to.

In some cases these were clearly clothes that families had
provided, and were very similar to what they themselves would visit in; a
classic case of the younger generations imposing their style onto their loved
one without thinking about what their loved one would want for themselves. Excuses
are made about having clothing that is suitable for rigorous washing, and
issues of comfort are also sited, but comfort is always achievable whilst
maintaining dignity. Men in their 70’s and 80’s never grew up in a culture of
tracksuit bottoms and t-shirts, so to find them wandering the corridors in such
attire, often dirty and stained is, for me, disrespectful to the person and
their heritage.

In their younger day you would most likely have found them
in a collared shirt and tailored trousers; even my father, who never worked in
an office and lived an outdoor life as a farmer, wore a collared shirt and
tailored trousers. Those were dad’s choices when he was able to make them, so
when I was making them my father was never seen in anything other than smart,
roomy, comfortable chinos and a collared shirt; very washable, hard-wearing, practical and dignified.

Respect for the person and a steadfast maintenance of their
dignity should never end when clothes are removed either. I have seen residents,
male and female, wheeled down corridors from the shower room to their bedrooms,
poorly wrapped in towels that leave them exposed, without anything to prevent
them from passing urine or faeces as they are moved in full view of visitors,
residents and staff. Indeed some staff members even found this amusing.

Other examples of lacking respect for people with dementia
can come from how the aids they need, as a result of the physical decline
associated with dementia, are referred to. The times I heard incontinence pads
described as ‘nappies’ – perfectly fine if an 80 year old was 8 months old, but
they are not. A man of 80 does not need his nappy changing, and to tell him he
does, assuming that because of his dementia he knows nothing of what you are
saying, is to assume far too much.

People with dementia have sensitivities, understanding that
they cannot articulate, feelings, desires, and an inner voice that is most
likely screaming to be heard. Using words attributable to babies and children
is both disrespectful and also confusing to the person with dementia. They may
well remember what a nappy is and wonder, as they look down at their fully
grown body, why anyone would want to change a nappy on them.

There is a massive temptation, because many of the symptoms
of dementia resemble a person regressing to often child-like behaviour or
mannerisms, to treat an adult living with dementia as if they are now a baby
again. However, just because someone calls for their mother does not make them a
toddler, nor does the fact that they have incontinence or need help to be fed.
Those physical symptoms are not who the person is, and they do not represent
their thoughts or feelings.

Dementia takes so much from a person, but anyone who treats
an adult like a child takes far more.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.